Sadie is almost 2 and just cultured pseudomonas for the first time. She's not showing any symptoms and they started her on two weeks of cipro with 28 days of tobi. Is this normal? Can we get rid of it? Is 2 too early to culture this infection? I have no idea what to expect, so any information from your experiences would be most helpful. Thanks!
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First Culture of Pseudomonas?
- Thread starter SadiesMom
- Start date
Sadie is almost 2 and just cultured pseudomonas for the first time. She's not showing any symptoms and they started her on two weeks of cipro with 28 days of tobi. Is this normal? Can we get rid of it? Is 2 too early to culture this infection? I have no idea what to expect, so any information from your experiences would be most helpful. Thanks!
Sadie is almost 2 and just cultured pseudomonas for the first time. She's not showing any symptoms and they started her on two weeks of cipro with 28 days of tobi. Is this normal? Can we get rid of it? Is 2 too early to culture this infection? I have no idea what to expect, so any information from your experiences would be most helpful. Thanks!
Our daughter cultured psuedo on diagnosis at age 3. She was put on Cipro (I think for 6 weeks?) and also two back-to-back 28 day courses of Tobi. She has been on Tobi 28 on 28 off ever since and she is now 7. All of her cultures have been clear since. So yes, this sounds normal and yes, you can get rid of it. Best wishes to you and I hope you kick it this first round like we did.
Our daughter cultured psuedo on diagnosis at age 3. She was put on Cipro (I think for 6 weeks?) and also two back-to-back 28 day courses of Tobi. She has been on Tobi 28 on 28 off ever since and she is now 7. All of her cultures have been clear since. So yes, this sounds normal and yes, you can get rid of it. Best wishes to you and I hope you kick it this first round like we did.
Our daughter cultured psuedo on diagnosis at age 3. She was put on Cipro (I think for 6 weeks?) and also two back-to-back 28 day courses of Tobi. She has been on Tobi 28 on 28 off ever since and she is now 7. All of her cultures have been clear since. So yes, this sounds normal and yes, you can get rid of it. Best wishes to you and I hope you kick it this first round like we did.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SadiesMom</b></i>
Thank you both for your responses. You have helped to calm some of my fears. This is her first CF related bug, so it's really hitting home for us. Plus everything I read on the internet makes it really scary.</end quote></div>
Yes, it is scary and it makes it more real, doesn't it? We were dealing with the diagnosis and I had learned just enough about CF to know what culturing PA meant. So when the call came that her culture was positive, I felt that her CF was already out of control. Time and knowledge have helped.
Your doc may prescribe a 28-on 28-off TOBI cycle for awhile, which will affect your treatment regimen. TOBI takes about 18 minutes to neb, 2 times a day. That will become routine though, just like everything else you deal with already.
Thank you both for your responses. You have helped to calm some of my fears. This is her first CF related bug, so it's really hitting home for us. Plus everything I read on the internet makes it really scary.</end quote></div>
Yes, it is scary and it makes it more real, doesn't it? We were dealing with the diagnosis and I had learned just enough about CF to know what culturing PA meant. So when the call came that her culture was positive, I felt that her CF was already out of control. Time and knowledge have helped.
Your doc may prescribe a 28-on 28-off TOBI cycle for awhile, which will affect your treatment regimen. TOBI takes about 18 minutes to neb, 2 times a day. That will become routine though, just like everything else you deal with already.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SadiesMom</b></i>
Thank you both for your responses. You have helped to calm some of my fears. This is her first CF related bug, so it's really hitting home for us. Plus everything I read on the internet makes it really scary.</end quote>
Yes, it is scary and it makes it more real, doesn't it? We were dealing with the diagnosis and I had learned just enough about CF to know what culturing PA meant. So when the call came that her culture was positive, I felt that her CF was already out of control. Time and knowledge have helped.
Your doc may prescribe a 28-on 28-off TOBI cycle for awhile, which will affect your treatment regimen. TOBI takes about 18 minutes to neb, 2 times a day. That will become routine though, just like everything else you deal with already.
Thank you both for your responses. You have helped to calm some of my fears. This is her first CF related bug, so it's really hitting home for us. Plus everything I read on the internet makes it really scary.</end quote>
Yes, it is scary and it makes it more real, doesn't it? We were dealing with the diagnosis and I had learned just enough about CF to know what culturing PA meant. So when the call came that her culture was positive, I felt that her CF was already out of control. Time and knowledge have helped.
Your doc may prescribe a 28-on 28-off TOBI cycle for awhile, which will affect your treatment regimen. TOBI takes about 18 minutes to neb, 2 times a day. That will become routine though, just like everything else you deal with already.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SadiesMom</b></i>
<br />
<br />Thank you both for your responses. You have helped to calm some of my fears. This is her first CF related bug, so it's really hitting home for us. Plus everything I read on the internet makes it really scary.</end quote>
<br />
<br />Yes, it is scary and it makes it more real, doesn't it? We were dealing with the diagnosis and I had learned just enough about CF to know what culturing PA meant. So when the call came that her culture was positive, I felt that her CF was already out of control. Time and knowledge have helped.
<br />
<br />Your doc may prescribe a 28-on 28-off TOBI cycle for awhile, which will affect your treatment regimen. TOBI takes about 18 minutes to neb, 2 times a day. That will become routine though, just like everything else you deal with already.
<br />
<br />Thank you both for your responses. You have helped to calm some of my fears. This is her first CF related bug, so it's really hitting home for us. Plus everything I read on the internet makes it really scary.</end quote>
<br />
<br />Yes, it is scary and it makes it more real, doesn't it? We were dealing with the diagnosis and I had learned just enough about CF to know what culturing PA meant. So when the call came that her culture was positive, I felt that her CF was already out of control. Time and knowledge have helped.
<br />
<br />Your doc may prescribe a 28-on 28-off TOBI cycle for awhile, which will affect your treatment regimen. TOBI takes about 18 minutes to neb, 2 times a day. That will become routine though, just like everything else you deal with already.
So we finished our first 28 days of Tobi, but they want to culture her again before we start a new round. Is this normal? Should I push for more months? The doctor said that they've been finding that 2 months in a row of Tobi works just as effectively as a year. I haven't found any information about it, so I was wondering if anyone else's docs have done this. She's only done one month and two weeks of cipro. She's asymptomatic, and the doctor said that years ago they wouldn't have even treated her if she wasn't expressing any symptoms of PA.
So we finished our first 28 days of Tobi, but they want to culture her again before we start a new round. Is this normal? Should I push for more months? The doctor said that they've been finding that 2 months in a row of Tobi works just as effectively as a year. I haven't found any information about it, so I was wondering if anyone else's docs have done this. She's only done one month and two weeks of cipro. She's asymptomatic, and the doctor said that years ago they wouldn't have even treated her if she wasn't expressing any symptoms of PA.
So we finished our first 28 days of Tobi, but they want to culture her again before we start a new round. Is this normal? Should I push for more months? The doctor said that they've been finding that 2 months in a row of Tobi works just as effectively as a year. I haven't found any information about it, so I was wondering if anyone else's docs have done this. She's only done one month and two weeks of cipro. She's asymptomatic, and the doctor said that years ago they wouldn't have even treated her if she wasn't expressing any symptoms of PA.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SadiesMom</b></i>
The doctor said that they've been finding that 2 months in a row of Tobi works just as effectively as a year.</end quote></div>
I have not heard of this, and I wish I knew if this was an example of different centers with different treatment protocols versus a well-researched position that will become the new standard of care.
<div class="FTQUOTE"><begin quote>
She's asymptomatic, and the doctor said that years ago they wouldn't have even treated her if she wasn't expressing any symptoms of PA.</end quote></div>
Yes, but I'm not sure why your doc thinks that is a relevant statement to make to you. The fact is that they are being more agressive with treating PA, which is perhaps part of the reason that people are living longer?
My bottom line is that I continue to be frustrated with differing treatment standards from accredited centers. How are parents and patients supposed to make sure they are receiving the best care? I hope you don't mind my venting on your thread. Maybe some others will chime in with their most recent experiences. In the mean time we are still cycling TOBI over 3 years since DD's first and only PA culture.
The doctor said that they've been finding that 2 months in a row of Tobi works just as effectively as a year.</end quote></div>
I have not heard of this, and I wish I knew if this was an example of different centers with different treatment protocols versus a well-researched position that will become the new standard of care.
<div class="FTQUOTE"><begin quote>
She's asymptomatic, and the doctor said that years ago they wouldn't have even treated her if she wasn't expressing any symptoms of PA.</end quote></div>
Yes, but I'm not sure why your doc thinks that is a relevant statement to make to you. The fact is that they are being more agressive with treating PA, which is perhaps part of the reason that people are living longer?
My bottom line is that I continue to be frustrated with differing treatment standards from accredited centers. How are parents and patients supposed to make sure they are receiving the best care? I hope you don't mind my venting on your thread. Maybe some others will chime in with their most recent experiences. In the mean time we are still cycling TOBI over 3 years since DD's first and only PA culture.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SadiesMom</b></i>
The doctor said that they've been finding that 2 months in a row of Tobi works just as effectively as a year.</end quote>
I have not heard of this, and I wish I knew if this was an example of different centers with different treatment protocols versus a well-researched position that will become the new standard of care.
<div class="FTQUOTE"><begin quote>
She's asymptomatic, and the doctor said that years ago they wouldn't have even treated her if she wasn't expressing any symptoms of PA.</end quote>
Yes, but I'm not sure why your doc thinks that is a relevant statement to make to you. The fact is that they are being more agressive with treating PA, which is perhaps part of the reason that people are living longer?
My bottom line is that I continue to be frustrated with differing treatment standards from accredited centers. How are parents and patients supposed to make sure they are receiving the best care? I hope you don't mind my venting on your thread. Maybe some others will chime in with their most recent experiences. In the mean time we are still cycling TOBI over 3 years since DD's first and only PA culture.
The doctor said that they've been finding that 2 months in a row of Tobi works just as effectively as a year.</end quote>
I have not heard of this, and I wish I knew if this was an example of different centers with different treatment protocols versus a well-researched position that will become the new standard of care.
<div class="FTQUOTE"><begin quote>
She's asymptomatic, and the doctor said that years ago they wouldn't have even treated her if she wasn't expressing any symptoms of PA.</end quote>
Yes, but I'm not sure why your doc thinks that is a relevant statement to make to you. The fact is that they are being more agressive with treating PA, which is perhaps part of the reason that people are living longer?
My bottom line is that I continue to be frustrated with differing treatment standards from accredited centers. How are parents and patients supposed to make sure they are receiving the best care? I hope you don't mind my venting on your thread. Maybe some others will chime in with their most recent experiences. In the mean time we are still cycling TOBI over 3 years since DD's first and only PA culture.